All posts by rosemaryfrazer

Throughout Disability History Month we have been celebrating the lives of disabled people from the past such as Franklin Delano Roosevelt, Alfred Nobel and Frida Kahlo and explored the changing lives and experiences of older disabled people living in the UK.

In the final week of Disability History Month, Jack Welch, who campaigns to raise awareness of the challenges people with autism face, looks at the importance of language, the theme of UK Disability History Month 2016.

In the UK, we’ve made good progress in recent decades to provide legislation on the rights of disabled people. Despite these changes there are deeper challenges and barriers people with visible or invisible conditions still encounter.

For someone like myself on the autistic spectrum, the obstacles to get the right level of support in a mainstream school and identifying what reasonable adjustments are needed in employment are just a couple of examples that many, like myself, have to confront.

Disability hate crime

From recent research by the Equality and Human Rights Commission, figures on disability related hate crime are worrying and attitudes towards disabled people are still of great concern. Disabled people aged 10-15 were almost twice as likely to have experienced a crime compared to non-disabled people (22% contrasted with 12.4%).

If levels of hate crime are still happening at this rate, despite recent developments and more positive portrayals of disabled people as we’ve seen with Rio 2012, we need to redouble our efforts to make people more aware of using language that is respectful of disabled people.

I experienced a disability related incident on London underground recently. I was left shaken and frustrated at other people’s ambivalence and that they choose to look away. Those who verbally attacked me were younger than me. Scope’s End the Awkward research, shows younger people often have difficulty in approaching a disabled person. What role can schools and education play to improve this attitude towards disabled people?

So what can we do? Newspapers and other media outlets still use phrases like ‘suffering with autism’. I have autism, I don’t feel I ‘suffer’ from it.

Language plays a central role in how we perceive individuals with certain conditions and that in turn reflects our behaviour when we meet a disabled person.

We all must consider the language we use and how it can affect disabled people, and we need to begin from a young age. It’s more difficult to confront and combat prejudice at a later stage.

We need to prevent negative attitudes from developing and leading to the incident I experienced.

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As we continue to mark Disability History Month, Bekki Smiddy writes about chemist and inventor Alfred Nobel. His legacy are the Nobel Prizes. Nobel experienced epileptic seizures throughout childhood and here Bekki talks about her own experience of epilepsy and why it’s important we recognise that disability is not a bar to achieving great things in life.

I was diagnosed with idiopathic generalised epilepsy when I was eleven, after several years of unexplained seizures. I had no idea what any of it meant. And I didn’t really care. What I did care about was the way people had started to look at me.

Before I was diagnosed, I figured epilepsy meant I fell down and couldn’t remember sometimes, it wasn’t a big deal. It was other people that made it a big deal.

Every time the word epilepsy came up, everyone in the room would look at me.

My classmates would whisper the word “freak” as I went by.

I got sent out of the class by my teachers for having seizures.

I felt embarrassed and ashamed for something that was completely out of my control.

Leaflets on epilepsy are filled with medical jargon and only explained what was going on with my brain, and scared me with talk of Sudden Unexpected Death in Epilepsy Patients (SUDEP). What I needed to know was how it would affect my life, how it would change it, and how to not feel so alien.

Looking through history

When first diagnosed I searched for historical figures who had epilepsy. I needed to know that I wasn’t going to be limited; that I could still achieve what I wanted with my life. That I wasn’t “wrong” somehow.

Throughout my adolescence and education I used it as rebuttal for those that attacked me or belittled me for my epilepsy.

We have been authors, military and political leaders, philosophers, scientist, composers and painters. Having a neurological condition didn’t have to hinder me in any way.

Nobel didn’t hide his disability, in fact he wrote poetry about what are perceived to be childhood epileptic seizures.

“…the convulsions followed, til I gasped

upon the brink of nothingness – my frame

a school for agony with death for goal”

But it appears to be written out of his history like so many “invisible conditions”,

Disabled people need role models

Epilepsy charity websites I viewed had sections listing famous people with epilepsy. Yet, it is missing from many disabled people’s biographies. We all need role models, but especially disabled people as we struggle for equality and to enjoy the same life chances as non-disabled people.

Disability History Month is important because many people don’t see disabled people as an oppressed group or understand that the language often used and how our impairments are described, can be so damaging. When people talk about the economy being ‘crippled’, or say that someone is “having a fit” when they mean a tantrum can be so hurtful.

We need to know more about the lives of disabled people and I hope that Disability History Month will help dispel the myths and help improve attitudes.

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Today is the start of UK Disability History Month, which runs from November 22 to December 22. The theme this year is disability and language. Scope will be marking the month by publishing a number of blogs which tell the stories of disabled people throughout history.

We will explore the language used when talking about disabled people, the lack of recognition of the achievements disabled people have made and asking what impact this has on the way we view disabled people today and the impact this has on the life chances of disabled people.

We have asked young disabled people to tell the stories of historical figures they admire. Featuring Franklin Delano Roosevelt, Frieda Kahlo and Alfred Nobel – people who have made a huge impact on our world. We will also feature blogs from older disabled people who talk about how their lives have changed over more recent decades.

The people we have chosen to write about have made such an impact in the world of politics, science and the arts and their legacy lives with us today. Yet despite all they have achieved, why do so few people know they were also disabled?

How many people are aware that Franklin Delano Roosevelt, America’s longest serving President and a political icon, used a wheelchair due to a bout of polio?

Why do we know so little about disabled people’s achievements?

As part of Disability History Month we want to explore why this is the case. Why do we know so little about disabled people’s achievements and why do we not celebrate them?

So much of the discourse around disability is negative and this can have a huge impact on how disabled people see themselves.

We all need role models and people we can look to inspire us and show us what can be achieved and this is particularly important for disabled people who already face prejudice when it comes to finding work or ignorance about what is needed to enable someone to live independently.

20% of the UK population are disabled and yet research carried out by Scope shows that nearly half (43%) of the British public say they do not know a disabled person. We hope that over the coming weeks as you read about the lives of disabled people, past and present, that you will have a better understanding of the lives of disabled people, challenges disabled have overcome but also of the challenges which remain and which prevent disabled people from reaching their full potential.

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Layla Harding is part of the Scope for Change campaign network and is a 2nd year Masters student. To mark Disability History Month she writes about Franklin Delano Roosevelt, the longest serving US President, who was disabled as a result of Polio.

I vividly remember during one of my Sixth Form lessons when a teacher passing through my history class as we were learning about President Franklin Roosevelt’s role in World War 2 said “Imagine having a cripple in charge of the country?”

As a disabled person who uses walking aides and sometimes a wheelchair, I felt that this poor attempt at a joke reflected many of the opinion’s FDR would have faced in early 20th Century America. But this was 90 years later. Surely we should have moved on in our views on disability?

I hate the word “cripple”; I find it offensive and derogatory and it has no place in today’s society. Leaving behind terms like “cripple” paves the way for more positive discourse around disability. For a teacher to be using this term, even jokingly, shows how far the disability movement still has to go.

The importance of language

Today marks the start of Disability History Month and the theme is language. It’s so important we have this month to celebrate the achievements of disabled people and raise awareness of the importance of language when we discuss disability.

Many today will not know that one of America’s greatest Presidents, Franklin Delano Roosevelt, was disabled. Not surprising considering he felt he had to hide his disability for fear of the reaction he would get.

In 1921, aged 39, he was diagnosed with polio, resulting in permanent paralysis and leaving him unable to walk without support. This seemed to spell the end of a promising political career but he went on to become Governor of New York and America’s longest serving President.

Throughout his political career he hid the fact that he was disabled. It was believed that it would be “a political liability if he were seen as this helpless man in a wheelchair” (Jay Winiki). His steel braces were painted black and covered by the clothes he wore. As a disabled person, I was shocked and disappointed to find out the lengths FDR went to hide the fact he was disabled; but I don’t feel he had a choice given the fear of public reaction.

He would use sticks to carry himself along whilst being supported by someone, which made people believe he could walk. He gave speeches sitting down or leaning against a lectern. Photographers who took pictures of him in his wheelchair would have their film confiscated.

Did FDR hide his disability?

Some challenge whether FDR did hide his disability, claiming he would talk openly about his condition and that it was discussed in the media. However, James Tobin believes that FDR didn’t want to be seen in public in his wheelchair because it was “just too potent a symbol of disability”. Even today society sees a wheelchair as something one is forced to rely upon rather than something which makes it possible for people to get around and live independently, as I do.

Watching the recent US Presidential Election has had me thinking how disabled people are hugely under-represented in politics. Would a candidate be able to be open about being disabled today? Considering the attitude of my teacher who felt able to use the word “cripple” and the emphasis placed upon Hilary Clinton’s health during the recent US election, I am not so sure.

Being disabled is not something to hide

School should be an environment in which a young person should feel safe and encouraged to expand their minds, and not feel disability is a barrier to achieving whatever they want.

For a teacher to make this comment was wholly inappropriate. Figures would suggest that few in the teaching profession identify as disabled but reliable data is difficult to find. But we need more disabled people become teachers so that they can show students a more positive view of disability.

I wouldn’t think twice today about challenging such negative language because like FDR I know that being disabled is not something to hide and does not have to be a barrier to anyone achieving their goals.

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In this blog Scope’s Campaign Manager Rosemary Frazer talks about the reaction to our End the Awkward campaign. She tells us why she’s convinced that using humour helps to tackle negative attitudes.

“It’s nice you people are allowed to work”

A cab driver said this to me when he was bringing me to my office recently. My non-disabled friends were stunned when I told them. My disabled friends simply give a sympathetic and knowing smile. Whether through innocent ignorance or lack of thought, some non-disabled people say and do the oddest things around disabled people.

I’m writing this blog in response to some of the comments and criticisms I’ve read about Scope’s End the Awkward campaign, which aims to challenge attitudes towards disability.

I should ‘out’ myself first. I am Campaigns Manager at Scope. I am writing this on my day off and it is very much my own thoughts and opinions. (Anyone who knows me will know I can’t and won’t be told by anyone what to think or say on disability issues or anything else!)

Some people have commented that our latest H.I.D.E content is patronising and others have said that people don’t behave that way. In my experience, nothing could be further from the truth.

Whilst no one has ever hid in a stationery cupboard or got under a table to avoid me, I have experienced very odd and sometimes very hurtful and disabling treatment as a wheelchair user in the workplace. Let me share a few of my own experiences.

“How would you feel working with a disabled person?”

There was the colleague whose entire tone of voice would change when speaking to me, as though I was a 7-year-old

There was the line manager who told me ‘It was a great privilege to work with people like you.’

There was the occasion where a team I was about to join was asked how they would feel about working with a disabled person

There was the senior manager who would ruffle my hair each time he saw me and accompany this with ‘Hello lovely young lady.’

I felt so alone and isolated. No one else in my workplace said anything or thought such behaviour odd or wrong in any way. Of if they did, they weren’t prepared to say anything.

This has had an impact on me and no doubt on my career and promotional opportunities. In the past when much younger I have left jobs as a result of such behaviour. At other times I have felt so demotivated that I felt like just giving up!

Of course I wouldn’t tolerate such nonsense now. But that has come with experience and building up my confidence to challenge such things. It also helps that I have allies that will support me should anything like this happen today.

Does humour work?

When I started working at Scope in 2013 I was a bit sceptical about End the Awkward and thought we should be focusing on other things like poor social care support, lack of access, or disability hate – rather than these tongue-in-cheek films which seemed rather silly. Of course Scope does work hard on those other areas and have done so in the past. There’s also a lot of great work being done by other organisations and by fantastic disabled activists too to address these issues.

I’ve read research findings on attitudes towards disability and it really saddens me that we have not moved on in our views towards disability in the way we have on race, sexuality or gender. End the Awkward addresses that.

It also takes the issue directly to a big section of the population who don’t engage with disability equality and too often don’t know any disabled people. We’ve found that humour is a great way to engage this audience who might not have previously paid attention to disability.

The Golden Rule

We know that from the feedback we receive. Attitude change is crucial to getting better policies and practices in place to give us the opportunity to flourish in the workplace, to play our role in communities and enjoy the same life chances as others.

When I speak with younger disabled people they tell me how much they love End the Awkward. Non-disabled campaigners tell me how impressed they are with the approach we have taken. I have seen how humour has been used successfully to address other areas of discrimination and I honestly believe it can work to address the sometimes suffocating prejudice I have had to endure throughout my life.

So H.I.D.E, don’t hide. Just don’t treat us differently than you would want to be treated yourself and if you have your own ideas on how to improve attitudes towards disability then please share them with us. We always want to hear from you!

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Scope for Change, our training programme for campaigners, is supporting a group of disabled people to launch their own campaigns. To help them on their way, we invited Kajal Odedra from Change.org and Lucy Ann Holmes from No More Page 3 to share their campaigning experiences and expertise.

“Campaigning is a marathon, not a sprint”

This was one of the key messages which emerged from a training session on Saturday 9 July when disabled campaigners involved with Scope for Change came back together for the first time since their residential training weekend in early April.

Seb, a Scope for Change campaigner

Since the training weekend, the campaigners have been developing their strategies, tactics, and creating change through their exciting campaigns.

The campaigners taking part in the programme come from all over the country and are aged between 18 and 25 with a wide range of impairments.

Coming from a variety of background with varying degrees of campaigning experience, the campaigners are focusing on very different issues and are using different methods to achieve their goals.

The training day was to give everyone the opportunity to meet up, compare their campaigns and share their experiences.

Diverse campaigns for a diverse community

Kajal and the Scope for Change group

There are nearly 12 million disabled people in the UK. The Scope for Change group reflects that diversity within the disabled community. Some of the group are focusing their campaigns on making train transport more accessible, while others want to raise awareness of hidden impairments.

A number of the campaigners are working together on a campaign to end domestic and sexual violence against disabled women. Other campaigners are focusing on making museums more accessible to people with autism, making wildlife reserves more accessible and improving access to gyms for disabled people.

Many of the campaigns have a very local focus, as the campaigners want to play role in improving their own communities.

A packed agenda

Kajal presenting

We had a full agenda with presentations from Kajal Odedra from Change.org who spoke about building your campaign support. Lucy Ann Holmes from No More Page 3 gave her own personal story of running a campaign and discussed the various challenges she faced.

Richard from Scope and Lucy from No More Page 3 presenting

Other workshops covered areas such as the importance of robust research to help your campaign succeed and advice on fundraising techniques, as well as advice on how to sell your campaign to the media.

Jack Welch, who’s running a campaign to make museums more accessible, told us how he was going to use some of the more practical advice:

“It was brilliant to have some of the most experienced and prolific figures in the campaigning circuit. What especially struck me was that the more authentic and connected you were to your cause, the greater chance it is to be successful. For me, I’ll personally have to take Lucy’s advice that doing too much in such a short space of time can quickly exhaust you – the impact will be much better if you spread your efforts over an extended time frame. ”

Sarah Troke had been following Lucy’s No More Page 3 campaign from the start, and thought it was really useful to hear about her positive and negative experiences first hand: “It was really inspirational to hear from someone who had succeeded on such a big campaign, but was also important to hear how she learnt to be realistic and how to deal with ‘campaign burnout'”.

A strong support network

It was great to catch up with everyone and see the progress they have made with their campaigns. It was wonderful to hear the campaigners talk about how being part of the Scope for Change programme has given them the confidence to speak publicly about their impairments for the first time, and explain the impact this had on their lives. Being able to share their experiences has strengthened their resolve to address the negative attitudes and discrimination that affect them and other disabled people.

The campaigners are working hard to improve the lives of other disabled people, including those who may not be able to campaign on their own behalf. Many of them have said that being part of the Scope for Change community has given them a sense of solidarity with other disabled people and boosted their confidence. No longer feeling like they are working alone, the campaigners are part of a group that is struggling for equality and for the same life opportunities that so many of their peers can take for granted.

Scope for Change campaigners

This is the first time Scope has run this type of training programme. We will be working closely with the current group of campaigners to plan for the next stage for the programme in 2017. We want to improve upon what has been achieved this year so watch out for applications to open for the next Scope for Change.

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Becca Bunce is a disabled activist who set up IC Change, which campaigns to end violence against women. Here she talks to Scope about the importance of campaigning, and what it meant for her and her colleagues to be recognised by President Obama for bringing attention to this important issue.

Campaigning for social change can be a lonely pursuit. Little recognition is given for the days, months and years spent in planning strategies and tactics, attending meetings, finding allies and persuading your opponents to come over to your side.

Paying it forward

At a town hall meeting in London on April 23, the US President Barack Obama told 500 young people to “reject pessimism, cynicism and know that progress is possible”. He praised Becca Bunce for her work and for ‘paying it forward’ and offering support to abused women around the world through the work of IC Change.

If the UK Government brings the Istanbul Convention into law, they will have to take all necessary steps it sets out to prevent violence, protect women experiencing violence and prosecute perpetrators.

Becca is someone I have known since she became a recipient of a scholarship previously funded by Scope to give a disabled campaigner the opportunity to take part in Campaign Bootcamp.

Disabled people must be represented across all campaigns

“Scope kindly gave me the opportunity to learn exciting and valuable campaigning skills – and now I’m campaigning with IC Change to help create a society where women and girls can live free from violence and the fear of violence. Disabled women are two to five times more likely to experience violence than non-disabled women, but often their voices are lost in mainstream women’s rights campaigns. Disabled people must be represented across all campaigns, just as disabled people are represented across all of society.”

“Nothing prepares you for the President of the United States mentioning your name. It feels wrong that I’m being held up as an example when I’m working no harder than anyone else on these issues. I don’t like being in the spotlight – it’s the issues – not me which are important, but if it gets people to sign the petition and prompts others to support the work of IC Change then it will have been worth it.”

Making the changes they want to see in the world

Becca has inspired other disabled people to get involved in campaigning for social change too. Several successful applicants to Scope’s recently launched campaigning skills programme, Scope for Change, applied as a direct response to reading about how much Becca had benefited from learning the skills and tactics needed for successful campaigning. Now they are making the changes they want to see in the world.

Too often disabled people are forgotten about in our communities and their achievements can go unnoticed. Hopefully the recognition given by President Obama to the work of Becca Bunce and other young people will help in showing just what disabled people have to contribute if they are given the right support and opportunity to do so.

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Have you given up already on all those New Year resolutions you made? Here is one promise which we can help you fulfill: help change the world in 2016 by applying to our campaign network Scope for Change. There is only a few days left before applications close so what are you waiting for?

We usually find ourselves searching for ways to lose weight and promise to get fit, learn another language or finally get around to clearing out that store cupboard which makes us want to scream each time we open it to cram yet another unwanted household item inside.

Be realistic

My own goal for 2016 is to try a new experience each month. I have to admit to taking the easy option at times so each of my new experiences don’t necessarily involve vigorous exercise! It may be visiting a new place or learning a new skill without having to put too much pressure on myself. Whatever happens, 2016 won’t be dull.

You never know where campaigning will take you

One of the things I love most about my job in campaigning is the exciting challenges and opportunities I have to work on exciting in innovative campaigns such as Scope’s A-Z of sex and disability which had me Tweeting all manner of content that I never thought I’d be doing. This is the wonderful thing about campaigning, you can never tell where it will take you.

Change your world in 2016

I love a challenge, and we are sure you do too. This is why Scope is offering campaigners who are passionate about disability equality issues and aged between 18 and 25, the opportunity to learn new skills and improve your existing campaigning tactics.

Our Scope for Change campaigns network will offer you training on the best use of film, social media, story telling, Blogging, Vlogging, tactics, strategy and planning to make your campaigns stand out from the crowd.

You will also be supported throughout the course by expert campaigners and be supported by Mentor who will offer support and advice throughout your campaigning journey.

2016 is the year to make that change in your world so please apply to join us on this exciting adventure. Who knows where it might lead? The applications close on 17 January, so what are you waiting for? Who knows it might lead?

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As we approach the end of a busy campaigning year here at Scope, we’ve been reflecting on which campaigns have got us talking and why they were so successful.

What is a campaign?

Campaigns take many forms such as advertising campaigns, fundraising, political, awareness raising or those designed to make people think and act differently on a particular issue.

Crisis and Conflict

This year has been a busy one for campaigners, not least because of the UK General Election. But we have also had war, terrorist attacks and a refugee crisis which was the focus of much campaigning.

Save the Children’s If London Were Syria campaign, depicting the horrors of war in Syria as though happening to child in London through very good use of film, stood out in the minds of many of us. Save The Children’s harrowing Most Shocking Second a Day video has had over 50 million views on Youtube alone.

In response to the horrors of the attacks in Paris in January and again in November we had the Twitter #Je suis Charlie and Facebook’s tricolor which allowed social media users to show their solidarity with those who had lost loved ones in France.

Body beautiful?

We live in an era where we are very conscious of our bodies and how we look. The campaign This Girl Can encouraged girls to get into sport and physical activity. We loved the energy in this campaign and the positive message that regardless of your body type, everyone can be more active. The soundtrack accompanying this ad, Get Your Freak On by Missy Elliot really hit the spot.

A very different campaign on body image created a lot of debate and controversy. The Beach Body Ready ad campaign attempted to portray the ‘perfect’ body and spawned many spoofs of the original billboard ads, such as that below.

The campaign challenges people’s attitudes towards disability through a series of blogs, infographics and short films aired on Channel 4.

We had a wonderful response to these campaigns and many people said their attitudes were challenged after watching the films and reading the blogs. Disabled people who led on these campaigns said they felt empowered by telling their stories and showing disabled people’s lives in a different way.

Through films, archive footage and blogs, we told the stories of those disabled campaigners who fought tirelessly to get disability issues onto the political agenda. We wanted to inspire the next generation of disabled activists to build on the success of campaigners of the 1990’s and bring real equality to disabled people.

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Scope’s End the Awkward campaign has been highlighting some of the awkward situations disabled people find themselves having to deal with. Here Rosemary Frazer, our Campaign Manager, writes about some of her more difficult taxi journeys.

I’m a wheelchair user and as much of London’s public transport system is inaccessible to me, I take lots of cabs, especially to and from work.

The vast majority of cab drivers I meet are absolutely wonderful and couldn’t be more helpful in getting me in and out of the cab. But occasionally I will get the odd (and I mean odd) cab driver who will say something which leaves me dumbfounded and wishing I was anywhere else but in the back of their cab.

“I’m a cab driver not a bloody ambulance driver!”

The first incident I remember was when taking a cab from my office to a meeting. The cab pulled up and I asked the driver to park a little closer to the kerb to make it easier to get in the car.

“I’m a cab driver, not a bloody ambulance driver!” was the response.

I was so shocked and told him I didn’t want to get into his cab because of his attitude and would order another. I took another cab and arrived late and quite angry at my meeting.

“I suppose you were in there spending all your benefit money on booze.”

On another occasion, probably my favourite, a cab picked me up at a pub where I’d gone with colleagues to celebrate the end of a project. I got into the cab and the driver’s opening remark was:

“I suppose you were in there spending all your benefit money on booze.”

‘Oh dear!’ I thought, poor man, he doesn’t know what he’s let himself in for! From Islington to Bow he sat in silence as I lectured him on disabled people and the additional costs we face, providing statistic after statistic on how the benefits some disabled people receive go nowhere near meeting the additional costs we incur.

I think it’s fair to say he won’t be broaching that subject again with a disabled passenger!

“How long have you been crippled?”

The latest incident was just last week when on my way home from work the cab driver asked out of the blue,

“How long have you been crippled?”

It really took my breath away. I asked him to stop the cab and I paid and got out. I just couldn’t remain in the cab any longer and pushed myself the rest of the way home.

Why am I sharing my experiences?

When I tell other cab drivers about these experiences they are absolutely furious and always say I hope you made a complaint.

For me such comments no longer have any lasting impact but I worry about people who have recently become disabled and who are perhaps out for the first time in their wheelchair. Such comments can and do rock a person’s confidence and may make them reluctant to venture outdoors or take a cab for a long time afterwards.

I was telling a cab driver I know quite well that I was thinking of writing about my experiences and he said you absolutely must as cab drivers need to know what not to do or say and there isn’t much training provided.

All passengers should be treated the same way and no one should make assumptions about our lives. When in doubt about the support to offer, of course it’s ok to ask, but think about the language you use. Hopefully reading about my experiences will help make journeys less awkward.